Wednesday, December 18, 2013

Abilities Reside Within Disabilities Part II


          My very first blog was on this same topic. It’s a great concept.

 

          Lately, life has seemed difficult and depressing, causing its usual effect on me; weight loss. On top of the parental transition, as one child has moved away to college and the other one is nearing that time too quickly, and my single parent woes … I had to say good-bye to a dear childhood friend. Watching cancer steal her from all and having no power to ease the pain for her daughter, husband, parents or siblings … I’ve just been sick. It all happened about two weeks ago. I became a recluse inside the walls of my home for the weekend, reading Mitch Albom’s books, one after another. He speaks a lot about life and death. I must say, it helped put things into perspective. I love Mitch.

         

          I dragged myself out of bed Sunday morning (after her funeral on Friday,) fueling my body with the necessary additive, coffee. Then some more. I had to pull it together, even if by artificial means. I was committed to host an exchange student from Guatemala AND attend a local play of The Christmas Carol.

My 26 year old female cousin, who has Cerebral Palsy, is interested in theater and is part of the production team, so it became a family affair for her biggest fans and supporters, us! Our family filled an entire section, and I brought the exchange student along for the ride. She went from 0-200 being thrown in our mix, especially if she had never been around people with disabilities or interracially blended families. I didn’t ask her, or forewarn her. I just took her into the deep end of the pool, and she loved it. We make abnormal seem normal, because it is our version of normalcy.

My aunt and uncle have adopted handicapped children for many years and currently have two living; the 26 year old girl and a 17 year old boy. The girl has severe physical disabilities, basically a quadriplegic, but no mental disabilities. However, her impaired speech and outside appearance causes people to assume otherwise, talking slow and louder as though she is deaf. She’s accustomed to the treatment, but it still must get old. Her brother, on the other hand, can walk, but though he resides in a 17 year old body, he will remain childlike. Similar to a two year old, if I had to guess. Both are black, and we are all white. Then, the exchange student is tan … so all colors were covered.

         

          As soon as I walked through the doors entering the play, and saw my family, especially the two cousins, I was set free from my debilitating outlook on life. I exited my little world and entered theirs. One may see them or their life as difficult, flawed, or whatever. I see it as beautiful and happy. Sometimes, I have a form of envy regarding their dispositions and joy. I want it.

 

          The Christmas Carol play was magnificent, kind of reinforcing Mitch Albom’s words to me about what is really important in life and how precious it is, along with the way we chose to live it.

          After the play was over, we congregated in the entrance, taking pictures and meeting the cast. I put on lip gloss and because its application stick had a light, it drew the attention of my cousin, the 17 year old boy. He is quite large because he doesn’t have the “full/stop eating” sensor, and probably because of an adrenal issue (or something.) So, that, combined with his African American genetics means … he has the most gigantic lips ever. And I LOVE them. Never have I seen a pucker such as his or received a more awesome kiss. I could just eat him alive. Anyway, he wanted lip gloss too. Without thinking, I just painted it on his voluptuous pucker, until I jumped as my uncle, his dad, said, “Aacckk, aacckk! Don’t put that on him!”

          “But, he wants some … and he likes it,” I say.

          My uncle shook his head with a half-smile, rolled his eyes and didn’t make me wipe it off.

          It was the cutest thing. My cousin was so proud of his glossed lips, keeping his lips in a pout from that moment on, even sitting in the car as we drove to the movies. He was displaying the magnificence of his lips for all to see. Of course, my lip gloss is frosted with glitter, as I can have it no other way. Glitter makes everything happier and better, I always say.

 

          My cousins wanted to see the movie, “Frozen,” and I joined them, bringing my youngest daughter and our exchange student … who by this time, was in love with my sweet family. She fit right in with no prompting, smiling the entire time.

 

          Now, to the good part. The movie.

Because the girl cousin is in a wheelchair, we sat in the designated wheelchair area. I sat on one side of her, my daughter and exchange student sat on the other side of her. My job was to get her drink if she got thirsty. She never complains about that either. Simply picking up your own cup is an unrecognized luxury, as is drinking without a straw. Mental note …

My aunt and uncle sat directly behind us. One on each side of their 17 year old son, so he would not escape. He is not one who can be reasoned with, and it is a task stopping him if he wants to do something because he is like a mini, brown, Mack truck. They know how to be prepared by now.

          There he sat, a huge child with a huge bucket of popcorn, perched between his mom and dad … happier than anyone I have ever seen. He cannot speak like us, but can make some sounds. They are unique sounds, some are deep and some higher. He seemingly knows what he’s saying and sometimes I do, but it really didn’t matter. The point was, he was a happy camper, and no words were needed to understand that fact.

          Every chance I got, I looked back at him, just to observe and absorb his joy. He smiled, teeth showing (lips still glossy,) for the entire movie, and participated with unimaginable enthusiasm. During the movie, a character said he needed volunteers to rescue the princess. This eager child was raising his hands in hopes to be picked by the characters on the screen, ready for the challenge. If the movie characters chanted a word, he would yell (or make a similar noise if he could) with them, trying to help. Arms flailing, rocking back and forth, bouncing in his seat and making his grunt-like noises. I would hear my aunt and uncle gently try to shush and calm him. As I tried to make myself an outsider looking in, I wondered what our surrounding movie watchers thought. I mean, it’s not like the people behind didn’t notice this child (adult looking) fellow. He’s a hard one to miss. But really, what was going through their minds? What would be going through mine if I were not me, and he not mine?

          It makes one stop and think. Maybe some think he shouldn’t be out. Maybe some thought he was disruptive, though his parents didn’t allow him to be excessive. Possibly some thought it was funny. But, somehow, I don’t think many thought my thoughts …

          Mitch Albom’s messages and The Christmas Carol’s message became tangible. Living in the moment. This child was 100% in his present moment. The part I admire, and slightly envy, is his inability to live in the past or future. He is only where he is at the moment he/we are living. He doesn’t care about what was, or anticipate what will be.

He has no worry.

So, no matter what anyone thought or thinks when they see my cousin, I wish for them that they could share and experience his world, his ability … not what the world sees as a disability.

          In one day, one day with my family, I came full circle. I was allowed to be a part of my cousins’ world, up close and personal. Both of them. Simply being in their presence is powerful enough to take me by the hand, rescue me from the undertow of my own sorrows, and pull me to safety … in the boat with them. In their safe, happy, simple world. It will always be amazing to me how the world sees “flawed” in the same thing I see as perfection. Many, or most, see disabilities. I see abilities. This, is thanks to my aunt and uncle. Angels here on earth.

 

Living in the moment,

Kasi

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